When you act as the caregiver for a cancer patient, it’s easy to let your own needs take a back seat sometimes. After all, they are the sick ones who need your support, right?
But taking good care of yourself is no less important than taking care of the people you love: whether it’s your kids, your aging parents, your younger siblings or your ailing spouse or partner. You’re actually more effective as a caregiver when your own needs are being met because you’re more likely to feel happy, centered, and capable of service.
To help make caring for yourself a little easier while also caring for a cancer patient, we went to senior social work counselor Paige Falcon. Here are five suggestions she shared.
1. Discuss your loved one’s goals of care.
People do better with clear expectations, so sit down as early as possible with your loved one and their care team to learn the goals of their cancer treatment.
If your loved one has early stage breast cancer, for instance, the goal might be to cure them with surgery or put the cancer in remission with chemotherapy. If, on the other hand, they have late-stage lung cancer, the goal of treatment might be to keep the cancer stable, so that they can live long enough to reach a particular milestone, such as a college graduation or the birth of a grandchild. In other situations, the goal might be to manage the disease like diabetes or another chronic condition, so that your loved one can continue to enjoy a good quality of life for as long as possible.
Each of these scenarios may require different things from you as a caregiver, so it’s important to be clear about what you’re trying to accomplish and establish at least a basic time frame.
“The more you talk about it, the clearer everyone will be, and the easier it will be to make adjustments down the line,” says Falcon. “Sometimes, patients make different decisions about what they want once they get further along in treatment. And what was true last year might not necessarily be true anymore. So, check in periodically. Ongoing communication is the key to keeping everybody in the loop and on the same page.”
2. Get organized.
Use whatever tools you need to stay on top of your loved one’s medications, treatments, checkups, and appointments.
“Some caregivers find daily planners to be really helpful,” Falcon notes. “Others just use a regular spiral-bound notebook to keep track of what was discussed at each appointment. They tape all the business cards they’ve collected on one page, and jot down the names of the doctors and nurses they’ve talked to on another.”
Some caregivers appreciate myChart because it sends them reminders about upcoming visits, but you can also set up alarms on your phone to help you remember appointments or when it’s time to give the next round of medication.
“The important thing is to find the tools and systems that work best for you,” says Falcon. “These can help lower your stress levels because you know you’ll be able to stay on schedule and access everything you need.”
3. Apply for financial aid, if you need it.
Not everyone is eligible for financial aid. But many nonprofit organizations offer disease-specific grants for patients and families who need help with expenses like transportation, housing, food and gas while receiving treatment.
“Some are income-based, and others have certain criteria you have to meet in order to qualify for assistance,” explains Falcon. “For instance, you might have to still be in active treatment or live a certain distance away from the hospital.”
If your loved one is receiving care at MD Anderson, speak with your social work counselors. They can help you identify the grants that you may qualify for. They can also provide information on federal and state disability benefits that you might be eligible to receive.
“We can’t directly assist you in filling out government forms, but we can send you the links and tell you where to find additional information,” says Falcon. “It’s worth looking into because every little bit helps.”
4. Connect with other cancer caregivers.
Even if you’ve already got a great set-up in place, it never hurts to expand your support system by joining one of MD Anderson’ssupport groups, if you haven’t already. There, you’ll find other caregivers just like you, who are dealing with many of the same challenges you are.
“Support groups are a great place to get your feelings validated and learn that your experiences are normal,” says Falcon.
You can also connect with other caregivers through myCancerConnection, MD Anderson’s one-on-one support community.
5. Add new self-care activities to your routine.
New coping strategies may involve self-care activities that give you something to look forward to each day.
“We encourage caregivers to develop routines that involve some form of exercise,” says Falcon. “But it could also be stretching, meditation, journaling or even making sure you take a shower — whatever helps you feel the most grounded.”